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    • #27618
      Susan Howitt
      Participant

      Hi Bob

       

      Dear Bob

      I had 2 Inogen  concentrators one for the home and one back pack and was very very pleased with it but they only go up to a maximum of 3 litres a minute, as you say can be plugged in anywhere but please be aware that it has no filters re viruses etc so you breathe in anything that is in the air around you, scary in these Covid times, I am much more at ease with my liquid oxygen back pack but it has severe disadvantages that you can only refill it at home from a huge liquid O2 tank.   I am just about to be issued with a  Caire *stroller*  liquid O2that goes up to 17litres a minute, I now need 12lts

      Take care all  Sue

    • #27617
      Susan Howitt
      Participant

      Hi Marianne

      Glad you got your Covid vaccine, even though I am classed a critically vulnerable I haven’t yet been able to get an appointment for the vaccine, I am too scared to take the Pfizer vaccine, my friends husband had the reaction I dread the most, he was unable to breathe easily for about 1/4 of an hour during the night following his vaccination, I struggle to breathe at the best of times.  The rollout in Europe is VERY very slow

    • #27522
      Susan Howitt
      Participant

      Hi Marianne

      I am English but live permanently in Burgundy France.   I am unfortunately I am at stage 4 following the latest exacerbation, and 27/7 O2, don’t need much when sitting or sleeping, 4lts, but if I move even on max which at the moment is 6,  I drop to 55 blood oxy, NOT good so have to have extra bottle that I can wheel around as a back up, having a Y junction on Tuesday so that I can hook up two big static cylinders together  with 10 metre nose hose. To go out I am in a wheelchair since last week as no back pack or portable bottle goes high enough.

      Luckily for me here I am on 100% with the ministry of health and don’t pay a penny not even in insurance, everything is free, I know I am so lucky as no argument at all , I get anything I want and need. Was worried Brexit might make a difference but no, as I have been here 31 years even though not naturalised I am classed as a permanent resident with all the cards and papers needed.

      Will pay you to have a finger oximeter so that you can stop and check before you get too low in O2

      I only asked about CPFE  because your FEV stats stay level and your DLC has gone way down.

      Hi  Marianne

      I was offered CellCept last October which I thought was far too late and with Covid about didn’t want to not have any immunity at all even though I live in mini mountains in a teeny weeny hamlet of 10 houses.

      Take care all,  Sue

    • #27517
      Susan Howitt
      Participant

      Hello Marianne

      Have you got CPFE?    Diagnosed in 2014 and on O2 for the last three years. I started off on a back pack oxygen recouperater (sorry can’t think of the English word)  they go up to a maximum of 3litres per minute but they can be plugged in to the electric current anywhere to recharge, including the car.  The problem with them is that,  with Covid about, they suck in air from around and haven’t got filters fine enough to filter germs !!! Now on liquid O2, and like Wendy I have the huge cylinders delivered weekly (3) plus 2 smaller ones, plus a smaller one for the car.  I have back packs, one bigger one (pretty heavy when full but you soon get used to it) and a smaller one (carry) that I fill, yes with mine you have to wait 15 minutes before using too,  and depending on ones usage it can last up to 5/6 hours, sadly in my case even on 7 it is not enough if I have to walk more than 10 paces and I have to use a wheelchair when out and about.  Only trouble with these back packs is that when filled and not used the O2 slowly leaks out.

      I agree keeping fit is everything, I am not supposed to be here but having to exercise my dogs kept me going for 2 1/2 years longer than predicted with all my extra complications

      Take care keep safe.

    • #27622
      Susan Howitt
      Participant

      Hi Bill

       

      Yes I am trying to get the Moderna vaccine, seems to be the safest one for me.  Can’t even get a Pfizer jab here even if I wanted it !!!  Live out in the sticks and in my county there were only 800 jabs (Pfizer available) and all went to Drs and frontline workers.  Being in the sticks I am safer, I hope, than most people.

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